Sunday, 5 February 2017

Lyme disease, or Lyme borreliosis, in North America is a group of systemic infections which
may be caused by Borrelia burgdorferi sensu lato (including B. mayonii) [2], B. miyamotoi [3-5],
and other unnamed tick-borne borrelia strains [3, 6]. Currently the diagnosis of emerging or reemerging
infectious diseases largely depends on finding evidence of the causative agents,
including borrelia, in the host by nucleic acid-based tests [7]. The accuracy of any diagnostic
tests must be measured against this standard of microbiological diagnosis. Using a serologic
test kit developed for the detection of antibodies against the epitopes of B. burgdorferi sensu
stricto strain B31 will fail to diagnose most Lyme borreliosis patients in the first two weeks of
acute infection and probably all clinical Lyme borreliosis cases caused by a strain of borrelia
other than B. burgdorferi sensu stricto B31 at any stages of the disease. The inherent inaccuracy
of serologic tests for Lyme disease can be compared with that of the Widal test for the
diagnosis of typhoid or paratyphoid fever (Salmonella infections). A comment extracted from a
Centers for Disease Control and Prevention (CDC) document is copied as follows [8].
“The Widal test is unreliable but is widely used in developing countries because of its low cost. It
is a serologic assay for IgM and IgG to the O and H antigens of Salmonella Typhi, but is not
specific and false positives may occur. Acute- and convalescent-phase titers are more sensitive
than a single serum sample. Newer serologic assays for Salmonella Typhi infection are
occasionally used in outbreak situations, and are somewhat more sensitive and specific than the
Widal test, but are not an adequate substitute for blood, stool, or bone marrow culture.” The above is an extract from Sin Hang Lee, F.R.C.P.(C)
Director, Milford Molecular Diagnostics Laboratory comments on a recent published article - “The Accuracy of Diagnostic Tests for Lyme
Disease in Humans, A Systematic Review and Meta-Analysis of North American Research” by
Lisa A. Waddell and colleagues

To overcome the low sensitivity of LD diagnostic tests in patients with early LD at the
spirochetemic stage, we must first acknowledge a need to develop direct detection tests for
Borrelia burgdorferi and related borrelia species known to cause Lyme borreliosis in North
America. To survey the existent useful direct detection tests which may not have been
published due to global editorial censorship by the mainstream medical journals, it is
recommended that blind-coded simulated blood samples spiked with various species of known
borreliae or blank be distributed by government regulatory agencies to all clinical laboratories
performing Lyme disease testing for a bacteriology proficiency survey, as routinely conducted
by the College of American Pathologists for Neisseria gonorrhoeae. The laboratories which
return the correct answers would be invited to further develop a generally accepted diagnostic
protocol to be used by hospital laboratories located in Lyme disease-endemic areas. To be of
use for timely patient care, the results must be generated within 5 working days, preferably in 48 hours. I believe this technology is already available. The first step to the Lyme disease
solution is to cut out the tribalism among the scientists whose careers were built on Lyme
disease research.

Lord Astor of Hever (Con) My Lords, I want to speak briefly on the specific health issue of Lyme disease, which is a rapidly ...

Disclaimer

Nothing I say can be taken as medical advice you must do your own research and discuss with your doctors.

Lyme Life written in 2009

I started suffering with arthritis in mainly my large joints especially my knees 6 years ago. The symptoms varied and I remember saying that every joint was affected except my elbows to one doctor. I was told it would be hormonal and to take the usual supplements cod liver oil or glucosamine ( I would certainly recommend buying shares in the companies producing these supplements) They had no noticeable affect.

All my symptoms deteriorated significantly over a few weeks,4 years ago. Hips shoulders and knees being the worst and I started with muscle weakness in upper arms and upper legs. I had difficulty standing and walking across a room. I was unable to walk upstairs and my husband was making plans to convert to a downstairs bedroom. I had seen 5 doctors and 3 Rheumatologists and put on steroids for Poly Myalgia Rheumatica diagnosis. I had been diagnosed with Fibromyalgia and ME/CFS.

I have X rays and scans showing signs of osteoarthritis and Rheumatoid arthritis. ( later note.- the X rays done some years into treatment showed my hands completely normal no signs of inflammation or RA confirming how they felt - normal) I have been retired early from the Civil Service having lost my job not to mention my earning potential. My illness seemed to progress through my body not affecting the same joints left to right at the same time. I had bursitis in left hip, right hip, left elbow. I had synovial thickening in both wrists. At that time I could not lift and hold a magazine so lifting a kettle I could only do if a third full and with two hands. Each joint in my hands fingers feet and toes were affected. I had swallowing difficulties and many other symptoms. None of this describes the endless and awful pain whenever I moved or the tiredness but inability to get quality sleep.

Two years ago my GP gave me Amoxicilin for a sinus/throat/chest infection. All my arthritis symptoms improved. The course ended the symptoms deteriorated I started a second course the symptoms improved. The improvement was more significant than when I had started taking steroids. This led my GP to suspect Lyme Disease. I laughed because we do not travel abroad but she said they had had other cases in the surgery in the early stages of tick bite and Erythma Migrans rash. She said but you have not had a bite. I said oh yes I have I had two on my ankles with rashes, March 05 this was confirmed on her computer when I had seen a locum doctor. My worst symptoms were waking up feeling rigid and having to painfully flex every joint in my body before struggling to get up. The only other time I had experienced this was in May 2003 during a flu like illness like no other I had ever experienced. At that time I had a bite and similar rash on my right foot which lasted like the other rashes about four weeks. I had also consulted the surgery and it was dismissed as a virus. I walked our dog daily in the woods adjacent to our house where the deer roam, prime tick area. Thus started my very lengthy search about Lyme Disease leading me through Lyme Disease Action to a doctor who specialises in this illness. He confirmed my GP's suspicions. I never had a positive blood test but then they are antigen tests and there is much research that shows they are unreliable. In my case the year of steroids and many weeks antibiotics could have affected the results. So with a clinical diagnosis and following ILADS International Lyme and Associated Disease Society guidelines I continued on antibiotics for two years. Both my doctors continued to treat me despite of Health Protection Agency advising against long term antibiotics. I am now nearly 100% recovered I have no pain or muscle weakness. I can walk upstairs something I could not do for three and a half years. I can garden do house work and live a normal life. I still need to pace myself and with only a few months to 60 will not be looking to return to work. Life is such a joy. Sadly there is much controversy about Lyme Disease and doctors in UK are taught that it is so rare. Well where I live in Guildford I have been in contact with a dozen other people with it so perhaps not so rare as HPA would like us to believe. I am in touch with nearly 2000 other patients through a chat line Eurolyme most had been misdiagnosed with several other illnesses. Look at UK charity Lyme Disease Action if you want to read more about this illness. There are many MP's taking an interest in the problems surrounding diagnosis and treatment see above charity links into a recent meeting at the House of Commons.

Thank goodness there are some thinking doctors around who have courageously treated me against opposition and I have made such a miraculous recovery albeit rather a lengthy one. One day there will be many more people who are helped with their chronic illnesses when IDSA starts taking note of what our courageous LLMD’s are doing following ILADS Guidelines.